Welcome to the Wonderful World of Hydrocephalus: Part 1, The Facts

Wonderful World? No. Wonderfully complex? Yes. And hydrocephalus seems to be a condition worthy of being from another world.

In a better effort to educate myself on my daughter’s conditions, I thought I would start with an educational series on hydrocephalus. Please keep in mind, I am not a doctor and merely a mother trying to understand how hydrocephalus works. This is not an easy task as you will soon learn. Hydrocephalus is not a black and white condition. It seems like the more I dig in, the more complex it becomes.

I didn’t know anything about hydrocephalus until Ellisa got diagnosed. What shocks me is that it isn’t that uncommon. To pique your interest, let’s start with some facts*:

• Hydrocephalus can effect anyone at any time in their lives. It is most common in newborns and the elderly.
• One to two of every 1,000 babies are born with hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors.
• Hydrocephalus is not a disease. It’s a condition.
• There is no cure. It can only be treated with surgery.
• 40,000 hydrocephalus operations are performed annually. That’s one every 15 minutes.
• The medical costs for hydrocephalus are over $1 billion per year, yet the National Institutes of Health (NIH) invests less than $1 million per year in hydrocephalus treatment.
• Hydrocephalus is complicated. Symptoms vary per person, causes vary per person, and treatment varies per person.
• Over the last 50 years, there has been NO significant improvement in hydrocephalus treatment and no progress toward prevention or cure.
• There are fewer then ten centers in the U.S. specializing in treating adults with hydrocephalus.

Now you’re wondering, what the heck is hydrocephalus? Feel free to learn more on your own or wait until next time when I explain “What is hydrocephalus and how does it work?”